Neurological conditions
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FND

TracybuchananTracybuchanan Member Posts: 2 Listener
Hi ,I was diagnosed with FND a year ago.I have mobility issues,fatique,arm ,shoulder, neck pain,tremors ,hallucinations,noise intolerance .I am 49,married to a fabulous man and have 2 boys and a dog.glad to be part of this group.any one else have FND?

Replies

  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    edited February 2018
    Hello Tracy (I'm guessing :smile: ) @Tracybuchanan, and welcome to the community. Good to have you with us.
    I ran quick searches in Scope on FND and Functional Neurological Disorder and, to be honest, did not find very much that was specific to it. That, however, does not prove a lot, and there may well be other sufferers whose posts and conversations haven't highlighted FND in their headings. I'm sure that many of the resources here could prove to be of use to you - about benefits, for example, and dealing with chronic pain. You should find a series of links in the purple band lower down your page.
    I had a quick look off-site, too, and found http://www.fndaction.org.uk/facebook-support-groups/  which, if you haven't encountered it already, might be of use to you.
    So I hope you'll have a look around and tell us a little more about you and your circumstances so that we can look for ways to help and support you. Others will be along to greet you who may know much more than I do :smile: In the meanwhile don't hesitate to chat or to ask any questions that may occur to you.
    Warmest best wishes,
    Richard
  • Lasian_AlumniLasian_Alumni Member Posts: 660 Pioneering

    Welcome to the community @Tracybuchanan, it's great to have you here!

    You can have a look at our groups and discussions to see which you would like to get involved with, whether it be to ask for some help and support, or just to chat with other members of our community. 

  • Susan46Susan46 Member Posts: 16 Connected
    hi
    i was diagnosed with FND a month ago. previous to that in april i was
     diagnosed with degenerative disc disease with bulging discs c2 to c7. every time i went to gp he gave me painkillers. i too have tremors, involuntary shakes and spasms, my headaches, neck pain, shoulder pain, back pain, ear pain, short term memory loss, confusion and my arms and legs not working properly, my speech issues....i asked my partner if im going crazy. i was taken into hospital due to severe neck pain and agonising pressure in the head. it was only then did drs actually see what i was having to live like. mri and ct scan showed everything in head ok. after months of waiting i saw a neurologist who diagnosed FND. so i was relieved i wasnt dying or going crazy. 
    FND is a specialist subject sO only medical staff who know about FND should help. im going to start FND physio soon and am on a waiting list for seeing neuropyschologist . FND is when the brain sends and receives messages but doesnt react correctly. all the symptoms are REAL. i had physio sorted but the neurolost cancelled it as FND needs different physio as ordinary treatment could make the problems worse. i will see a neurophyschologist to retrain my brain to think different and hopefully in time i will get better. since march 4th i have been this way and i now use wheelchair to go out with partner pushing me and in the home i have zimmer, comode, shower stool which is a godsend. both bladder and bowel are incontinant since this started and i get exhausted after 5 metres of walking. as soon as i stand im on a rocky boat and even when i sit this happens virtually every day. i cant cook because i have little strength in arms and hands and cant judge distance when going to pick something up. the neurologist aked me what i hope will happen with treatment. i said....as long as i can walk and speak again and stop the depression setting in then that would be great. yep, the tears and the cant do anything mood has set in and im sad a lot cos i feel ive been put to the back of the queue with nhs and ive had to fight every bit of the way to get anything done. im now struggling with sugar levels and my diabetic nurse has told me i must see a specialist now as since having FND my fasting level has gone from 50 to 90 and she says its not what i eat but because im not active now. 
    im off morphine and diazapan as they didnt help me anyway but whats annoying is the neurologist told us that i should up my other meds to a really high dose and would write to tell my gp. my gp hasnt received the letter concerning my meds . on top of that pain management told me to double morphine intake at my initial appointment but didnt write to my gp or myself to say. so we did that on his advice. im concerned that the specialists dont talk to each other or communicate well as im told  one thing then another. but now im diagnosed.....i only do what the neurologist says as he seems to be the only one who understands me and knows what im going thru is real. 
    i know ive gone on a bit about my own FND but having gone and still going thru so much, i feel reading about my experience might just help you even a little. FND isnt something many gps are aware of and therefore try to treat symptoms which could be a number of other ilnedses. i had to beg and beg for people to listen and i fell on deaf ears. tc


  • wavedancerwavedancer Member Posts: 6 Listener
    Hi, I was diagnosed with FND and dystonia  last year. I'm currently waiting for residential therapy in the hope of easing some of the curable problems I have. I'm  having a really bad day today so can't write as much as I would like but just wanted to let you know you're not on your own with your diagnosis. Will write properly on a better day when my brain and hand are communicating better!
  • Susan46Susan46 Member Posts: 16 Connected
    first appointment for one to one with psychoneurologist and she doesnt turn up. sat one hour, receptionist said she couldnt get in touch with her so left my phone number with the woman so she could ring us and arrange another day. no call from her. ive contacted since but still no reply. phoned gp and they getting in touch with her. like me, they agree that even if there was a problem on the day shd could have sent apologies. nothing and its been a week. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    I also have been diagnosed with FND there a good website, can’t remember what it’s called but just type in Functional Neurological Disorder.
    Im at the moment seeing a psychologist  to help with understanding and dealing with the symptoms. I have involuntary body movements and sometimes cannot speak properly.
  • DemRedDemRed Member Posts: 1 Listener
    Hi everyone, its not a site I wanted to join but here I am with a new diagnosis of FND.

    I've been going to the neurologist for ten years for peripheral vision loss (nothing wrong with my eyes), facial spasms and a big list of other symptoms that come and go. I was so scared this was the start of Parkinson's so I'm very relieved to be told its FND. They still want to do a lumber puncture and MRA and I suppose I should go along with that. I have though, been researching FND and this sounds very much like me, though I'm nothing like as poorly as some of you. 

    Look forward to reading the forums.
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    It's been suggested amongst other things. 
    A laugh a day keeps the psychiatrist at bay. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    There’s a very large umbrella that covers fnd. There good info on YouTube 
  • underdiagnosedunderdiagnosed Member Posts: 27 Courageous
    I've just been diagnosed with FND. Exhaustion, left sided weakness, tinnitus, difficulty with walking and balance etc. I also have various cardiac symptoms which the neurologist said he couldn't explain
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @underdiagnosed, how are you feeling? I know there can be multiple emotions when getting a diagnosis. Is there anything we can do to help? :)
    Scope

  • Susan46Susan46 Member Posts: 16 Connected
    i am on FNDhope site and its great that its a group of people who can support and give advice. fnd is really complicated and i have about 20+ symptoms most on an every day basis which has been awful. if you just fancy chat then im an Fnd warrior and have been in your shoes and still am. its frightening and a mystery really but its also real. xx 
  • underdiagnosedunderdiagnosed Member Posts: 27 Courageous
    Thanks for your comments Chloe and Susan. I am feeling Ok thanks I'm quite a positive person. I just need my cardiology appointment (not too long to wait now) to see if they can shed any light on the rest of my symptoms, but I suspect they may still be unable to explain what's happening. My most frequent cardiac symptoms occur during REM sleep which is strange. I wish the 2 departments could combine but I think it may be beyond the remit of NHS treatment. My GP is supportive. I'm not sure if there's anything you could do to help? I may look on FND hope later thanks for your support. Maybe another day though as I woke up 15 times last night with symptoms and am feeling kind of zombiefied!!!
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I'm glad you are feeling okay @underdiagnosed! I hope the cardiology appointment is a productive one and please do let us know if there is anything we can do to help :)
    Scope

  • wifeofwifeof Member Posts: 3 Listener
    Hi all I am the wife of an Fnd suffer. My husband suffers with head pain, arm and shoulder pain, weakness, tiredness, and sometimes the inability to walk or move. I wanted to ask if anyone has heard of a sufferer having the inability to have feelings. My husband seems distant with me and my children and seems to lack any interest or involvement. I wandered if this could be a symptom and if anyone has any ideas of what I can do to help x
  • wavedancerwavedancer Member Posts: 6 Listener
    I suffer with FND and when I read what you asked (wifeof) it made me think. Living with any type of chronic pain can drag you down into depression. I wonder if this is what's happening to your husband? It could account for him being distant and his lack of interest and involvement with everyone and everything. I get times when it takes so much effort to just get through the day that I don't have anything left for anyone or anything else so I 'close down' and withdraw into myself. I guess it's a case of self preservation of sorts. I don't know if it's a symptom of FND as such or whether it's just the side effects of how the FND makes us feel. I'm not sure how much sense that makes or if it helps you understand what may be happening to your husband. Are you able to talk to him about how he feels on an emotional level as well as a physical level? Does he see a neurologist or an FND specialist regularly? Do you go with him if he does? It may give you an opportunity to mention how he is if you do. I'm waiting for funding so I can go to inpatient rehab. This involves being treated by a multi professional (that's not the right word but I can't think what it is at the moment) team which involves a neuropsychiatrist along with working on the physical side of things. This suggests to me that there's an element of emotional problems on varying levels involved with FND. I hope this helps somehow.  It's certainly not easy having a member of the family with FND. I don't know how my partner puts up with me at times!

  • wifeofwifeof Member Posts: 3 Listener
    My husband has had a few sessions of physio and has seen a neuropsychiatrist but only occasionally (every 12 months or so) he has no other input from anyone else. I understand why you are saying regarding pain and the effects but it is extremely difficult to live with especially for the children who miss their dad. 
    i am looking to see if there is any other help that he can get as I am unsure where to go with it as the doctors don’t seem to understand the condition x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @wifeof and a warm welcome to the community! I cannot imagine how difficult it must be to see your husband like this, and I'm sorry to hear about the lack of support he has received. I know FND can be a condition that doctors can't seem to grasp, but your husbands symptoms are valid and are real. 

    Have you ever looked at FND Hope? They are a charity which explain FND really well and you may find useful. :)
    Scope

  • wavedancerwavedancer Member Posts: 6 Listener
    Hi wifeof,
    I know what you mean about the doctors not knowing much about FND. I've been passed from specialist to specialist and it's taken almost 9 years for me to be diagnosed. It was while I was in hospital having an operation for trigeminal neuralgia that I met a fellow patient who had seen the health problems I had and suggested that I may have FND. She'd been in hospital with it for 12 months! Luckily I live in an area where there is a consultant with an interest in it. Chloe suggested looking for FND hope. There is a closed Facebook group run by fndhope. I use it and can recommend it. I know there are some there who are dealing with loved ones with FND. I'm sure you will find support and advice. It does seem like a bit of a postcode lottery as to what treatment is available. Take care and if I can help please don't hesitate to shout. xxx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Thank you for sharing this @wavedancer :)
    Scope

  • wifeofwifeof Member Posts: 3 Listener
    Thankyou for sharing your advice. I will look at Fndhope. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    No problem at all @wifeof, please do let us know if we can do anything else. Also, feel free to have a look around. :)
    Scope

  • theladyloutheladylou Member Posts: 2 Listener
    Hi all, I was diagnosed with FND a couple of weeks ago having had a rapid deterioration in my health following a car accident. I struggle with walking, balance, pain, weakness, fatigue, blackouts etc and my speech is severely effected. I have been off work for quite a while and will probably have to give up my job as they cannot keep my position open forever. I was wondering if others have had to give up work and what experiences they have had with rehabilitation. I am supposed to be going to see a speech therapist and neuropsychologist but am still waiting for referrals. How long have people been suffering? Have people made recoveries? Any advice gratefully received. Thanks, Laura
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @theladylou and a very warm welcome to the community! I'm sorry to hear about your deterioration and the impact this may have on your job. 

    Unfortunately I do not have experience of this, but I hope other members will be able to share their stories.

    FND Hope might be a website that can help, they have all sorts of information and support groups.
    Scope

  • hdeakinhdeakin Member Posts: 126 Pioneering
    Hello @Tracybuchanan , @theladylou , @wavedancer , @wifeof , @underdiagnosed and @Susan46 ,
    I have just come across this post.

    I have written a blog post on FND if you are interested or it is helpful: 
    https://hannahdeakin.blogspot.com/2019/08/what-is-fnd.html

    I also had a stay at the Wolfson unit where they treat FND as well as other neurological conditions:
    https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html

    Best wishes,

    Hannah 😊
  • theladyloutheladylou Member Posts: 2 Listener
    Thanks Hannah I will take a look at your blog. I hope your stay at the Wolfson unit was beneficial. Laura
  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi all,
    last night I watched a catch up of a BBC2 programme... Hospital.
    The Walton Centre Liverpool was featured.

    I was in there in December where I finally got diagnosed with Spinal PPMS, after 22 years of being given the runaround.

    My point is that 3 people with FND were featured. Oh my word! I had heard of it but didn't know much about it till last night.
    What a complicated and very cruel condition.

    A neuro professor had given  specialised physio to a man featured and what a difference it made for him...but very sadly, there was no more money for the trial to continue.

    I am so sorry for those of you affected by FND and wish you all the best and hope you find effective treatment.
    Pollyxx

  • hdeakinhdeakin Member Posts: 126 Pioneering
    Hi @pollyanna1052 I am glad you had a good experience at the Walton centre, liverpool. Gosh that is a very long time to get diagnosed. How do you feel now you have the diagnosis? I imagine mixed emotions. I saw a bit of the programme, it looked really interesting, I am hoping to watch the whole thing soon. But I think others in this group might find it interesting/ helpful to watch. I hope you are all as well as possible x
  • anistyanisty Member Posts: 171 Pioneering
    I saw the programme too @pollyanna1052 and also a woman with FND was one of the participants on the undateables this week.  Not something I had heard about either before these programmes and this site. I hope funding can be found to research treatments and even a cure one day.
  • clare_1clare_1 Member Posts: 123 Pioneering
    Welcome.

    I was diagnosed with FND over 5 years ago now. I'm now 35, I have  many symptoms with FND but my main one is that I am unable to speak properly and my partner and mum have to handle my phone calls and because I suffer with social anxiety also, one of them have to come with me if I ever need to go oppinment ect.

    It has been a very hard 5 years and only just coming round to the diagnosis. It dose take a long time in finding  doctors specialist to understand it is real and not just in your head. From the time Iwas diagnosed,  I lost my 8 year job, they had to let me go beacuse nothing more I could do, I can no longer work as a hairdresser either and we sadly lost our flat due to this and other illnesses I have also been diagnosed with.

    I'm positive part to this is that. Yes times are going to be hard and you will certainly find out who your real friends/family are. Try not to let things get to you, you will have bad days but good days are just around the corner.
    I found for me is to do things on a traffic light strategy. Stop when you feel you need a rest, don't burn yourself out thinking you need to get it all done right then. 
    It's ok to have bad days just try and think of positive things, even if can only think of one thing in a day. Always end day on a positive.

    Know that your not alone and if you every needs chat or a moan. Someone is always about to listen.

    I wish you all the best in getting the answers you need and I'm sure people on here will ha e loads of advice and people to turn to for help if needed. 
  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    hdeakin said:
    Hi @pollyanna1052 I am glad you had a good experience at the Walton centre, liverpool. Gosh that is a very long time to get diagnosed. How do you feel now you have the diagnosis? I imagine mixed emotions. I saw a bit of the programme, it looked really interesting, I am hoping to watch the whole thing soon. But I think others in this group might find it interesting/ helpful to watch. I hope you are all as well as possible x
    Hi Hd,
    I feel extremely relieved and happy that I finally have a label and know where I belong! I felt lost all those years.
    After so long I cope as best as I can. I do have a really good support system and a great hubby of 48 years!

    I remember you posting how good the Wolfson unit is. I`m glad they helped you.
    Tae care xxxxx

  • diane01diane01 Member Posts: 45 Connected
    Hi i'm a newbie to this group really wish i understood what was going on in my brain almost 3 months been suffering with shaking legs my brain always feels empty & memory loss eye sight problems unable to take on a daily task with out getting tired easy lost interest in everything because unable to focus i cant seem to communicate with people & somethings i'm getting shaking arms i jerk in my sleep & tremor i get to point where my behaviour changes from wanting to twirl my hair smoke & pick my lip & always feeling feared cant even try to explain how my mind feels  drs says its fnd going off my symptoms of how i'm reacting some kind of neurotransmitters not connecting the way they should i get up like there is nothing wrong with me like i forget then go to do something i'm unable to do then i cry in despair cant seem to control this way of living spend all my time being bed bound drs referred me to a neurologist  after battling for nearly 3 months with them cause they thought it was just mental health due to covid now neurologist list is 18 wks frustrated as tackling this condition & menopause to dont feel i'm eva going to see better days the only support i've got atm is my other half kinda taking one day with me as it comes but i kno he misses the old me like i do! :(:(:( 

  • Susan46Susan46 Member Posts: 16 Connected
    I have fnd too. My symptoms are numerous and very same as MS parkinsons n stroke.
    I've been diagnosed 3 plus years ago and I have many days where its too overwhelming. I'm in wheelchair, confused, hronic exhaustiondissociated, weakness on my right side,  incontinence, tremors etc etc. Its never ending. I'm on fndhope site which helps us understand fnd and others give their stories and listen when it gets too much for us.  
    Relaxing and pacing helps although I'm one of those people who does too much in one go, still can't fet pacing right. Ifbi don't pace myself I'm left happy that I've managed to fo whatever I was doing but chronically exhausted and suffering for days after. Having a good support at home is needed. Fnd can look fake but it's definitely real. 

  • diane01diane01 Member Posts: 45 Connected
    Does your brain feel like its not working properly? I feel like im always falling too & my feet go num hands & legs shake cant describe how my brain feels 
  • Susan46Susan46 Member Posts: 16 Connected
    Yes. My brain doesn't give correct messages to my body. My speech is horrendous now too. Thats when I can say words. Sometimes I can't even speak.
    Pace yourself and if needing a break, go into quiet place and maybe nap. Distract yourself if you can by ignoring what the brain is making you fo and if you use distraction it can work.i have NEAD too none epeleptic seizures which are triggered by lights, noise etc. Do you have these too?
  • diane01diane01 Member Posts: 45 Connected
    Susan its all new to me this pacing myself is very difficult i'm bed bound when my brain does go funny its like i sit & try & focus the best way hoping it will pass soon but waking up in the morning & my brain just doesnt feel mine anymore another issues is i dont feel like i've got any happy hormones if i do one job my brain flares up frustrating when u want to just try & do a bit of something i dont kno what the nead the is symptoms i have is maining feeling un balanced even when sitting jerking & tremors in my sleep shaking legs when standing pins needles in hands & feet & these goes go num too! Spasms everywhere Memory loss & feeling panicky then this compulsive thing where i pick my lip twirl my hair strange behaviour susan its all freaking me out had this for 3 months now & had a massive battle with doctors just to get them to refer me to see an neurologist dr did say its fnd based on my symptoms but feeling there is more of an issues..if u dont mind me asking how old are u & have u had fnd long ?  
  • underdiagnosedunderdiagnosed Member Posts: 27 Courageous
    i have fnd diagnosis too although it doesn't explain all my symptoms. i have had health problems all my life which are gradually worsening with age. i use a wheelchair outdoors but the pandemic has made me housebound. sleep is difficult as i wake continually through the night with symptoms. i found pacing myself very difficult too but it gets easier with practise and i feel so much better when i do. overdoing things can trigger symptoms. occasionally i have to soldier on if i'm not getting enough care. i find it hard when my left sided weakness kicks in. when its not too bad i sit at home and knit which stops me from getting bored, its therapeutic and gives me purpose. i feel a bit lost when i can't. i find tv helps, radio can too as does talking to people. if you can find something you're interested in and able to do/follow which distracts you that could really help. you can explore the world online now if you like.
    have you been offered any help for your fnd? there's not really anything available in my area but i think it depends where you live. do you have friends/family/carers who are able to help you when you need?
  • diane01diane01 Member Posts: 45 Connected
    I dont find anything interesting with this condition i feel really hopeless to be honest only so much tv i can watch & h8t just being bed bound but any simple task i suffer foing or carrying out i ave try to push myself just to keep my bones moving but hard to control when my brain has other ideas i have 2 teenagers & a husband who is struggling with me as hes had to take on everything including me being fed up..how long have u been suffering with the condition & how old are u if u dont mind me asking ? X
  • Susan46Susan46 Member Posts: 16 Connected
    I was 60 on 12th Feb. I met my partner in june 2018 and diagnosed in Octobersame year with it. Ive also got c3 to c7 bulging discs which the neuro tried to say symptoms were from. I got 2nd opinion cos my symptoms dont seem to point to what he said. We bought house and moved in together in that Dec but stairs became a no no. My mobility deteriated to virtually nil and fnd physio, neuropsychology and talking therapy all discharged me as no improvement. My partner is an angel. Hes stood by me and helps me. My son moved back in with us because I needed more help. I walk like a weeble, talk gobbledegook constantly and cant remember things just said or done. I noticed that more I stress the worse it gets and symptoms go higher level.
    I've got vertigo symptoms big yime, can't bend down, can't look up the list is endless. 
    But I have a friend who my old school friend put me in touch with as she also has fnd and was struggling. Its nice that we can text and support each other.you can too if you'd like.
    The main thing is to pace. I try but I've always done things as they need done rather than leave it. but then i find myself whooshing , my head feeling like its going to fall off and depend next four hours exhausted. I dont have anyone else andcrely on my fella and my son so much. My speech is horrendous. It's more of a guessing game and random things come out that make no sense or fit in with the context of the conversation at that time. It's hard, it's frustrating and awful to point id not wish it on my worst enemy. I'm just thankful that I've got good support from son and my partner. There's no help out there and no hope really. A postcode lottery in UK.
    You want yo personal message me thsts fine. Its good to know you're not salone suffering. Believe me, there's been times I've thought I dont want to be here. I've thought of ways yo do it but I'd be hurting those I love and I could never do that. 
    You asked how long. Ironing back I've had symptoms come n go for years and Dr's couldn't find the cause.but three plus years ago it just reared it's head full time and I'm crippled with its symptoms. I dldo have NEAD which is non epileptic seizures. 

  • diane01diane01 Member Posts: 45 Connected
    I think your really brave susan glad you've got really good support behind u too!.nice having a friend that can relate to you with the condition i haven't mentioned it to many people because i guess i'm to proud or maybe a bit a shamed because i dont want to be treated any differently if you kno wot i mean because i've never relied on any1 left home at 17 & never been back always been independent regardless 18 found out i had pcod in my early 20s i had two miscarriages & still had hope so easier when ur younger to cope & come to terms with stuff my battle now is unknowning what is next i'm unsure of how to tell my kids about whats going on my daughter just thinks its menopause because i'm also going thru that as well just coming to grips that my body mental state brain is changing within a blink of an eye pacing myself is 1 thing i've never done because always been really active worked & was always on the go i know i need to stop thinking about the girl i used to be a try to learn this is me now but really has impacted on everything i find myself just looking in the mirror & wondering what happened & how the hell do i cope at the moment all so much to take in!. I hoped Finding others would give me a bit more understanding & reassurance but ano its me thats got to expect it wish was as easy as them 3 words xx  
  • Susan46Susan46 Member Posts: 16 Connected
    You need support. Your family are first port of call and regardless if you're in the menopause, those who care will understand when you tell them. Menopsuse is completely different and anyone clued up on menopause and its symptoms will know what you're presenting is not from that. 
    Many of the symptoms look fake. How can you be fine one minute and not the next but we who have fnd know that it's not fake,,,,its definitely real!
    I'm from the North east. I was going through a period of total hell with fnd and neck issues and my Dr's hadn't even heard of fnd so offered no help at all. I was in such a state with chronic pain and the whole load of serious symptoms that I wrote to a neurology dept in Sheffield just begging someone to listen as I was desperate. I never expected a reply but I did. The neuro said I should show my then gp his reply. He said I should be considered for in patient treatment as in his opinion I needed it. My gp came back with we dont have the funds. Theres 1000s of us suffering.its not just those with fnd,,,,,,its the partners and children who suffer too. If we can't get our heads around it then how can they understand it?
    You need to tell your family. dont go through this alone. If people don't accept fnd then their choice not to be involved but they need to stay away. The stress of anything exaggerates the symptoms and it doesnt get easier for most of us although apparently if you get the help in first six months you can maybe get bits of normality back.
    Just remember that there's already two of us on this site with fnd and I for one am there if you need to talk or ask for advice. Our bodies are different, our symptoms maybe similar or different in  levels, frequency of symptoms and amount. Just because I get high level of pain, chronic exhaustion memory loss and NEAD etc doesnt mean you will. I've got 20 plus symptoms most are there 24/7 and rarely get any relief from them. I cope. I cope because I've got two people who've understood me from day 1. 
    Need to vent, vent.
    Need to cry, cry.
    Don't wear a smile to cover your pain, let it out. Stress is a huge factor and trying to get through it alone just creates a lot more inner stress that fnd brain twists and twists until it comes out as a symptom. I'm sure your family will understand and give you the support you need. However, ask yourself how you would feel if shoe was on the other foot and you were left in the dark about it. 
    My son just said today that he never realised how bad I was. He said he knew I had a lot of bad symptoms but he didn't know to what extent and how much they affect me until he came to live with us. Luckily we can laugh together about all the mistakes I do. Find a hobby you can do. I dont have strength in limbs and with right side weakness its hard to knit or paint or do much at all for me. I love jigsaws and writing, reading books but unfortunately I can't do. Either memory, concentration or weakness has taken all those hobbies away from me.ive no concentration anymore. TV I can watch emmerdale or corrie but I have no interest in anything else. Films,,,,,due to my memory I could have watched a film 10 times in the past but would not remember doing so. It leads for a very interesting life lol.



  • diane01diane01 Member Posts: 45 Connected
    I can relate to memory loss i forget the days everyday is like a sunday i do very little manage one tiny job a day haven't been outside proper for months panic mode takes over & body shakes to really bad limits i think with it being early days i just feel its to much for my kids to take on board because my lad doing his GCSEs & i dont want to worry as need him focus on them & ano my daughter at 14 will be much more understanding but she'l also be fretting too & she'l have loads of questions that i'm unable to answer but u've give me some valuable ideas on getting thru the day a bit more i'l have to find that one hobby that doesn't involve a lot of energy or concentration aha.
    Not like i'm good at much but u mentioned painting & i guess i do like to draw so i'l take that up again not dont it since having my kids or maybe colouring eventho i'l feel like a kid again but ways of just passing the time & not getting board 
    .. 
  • deb74deb74 Member Posts: 766 Pioneering
    Hi @diane01. I have just started diamond painting. I know quite a few of us on this site do it. It doesn't take any of your energy and you can just lose yourself in it for hours. I also have fibro and i also have ME. I know how hard things can get but you just have to take it one day at a time
  • nix91nix91 Member Posts: 1 Listener
    Hi everyone. I’ve just turned 30 and was diagnosed with FND a few days ago. I’ve had tremors for 6 years and they’ve gradually got worse. I find the tremors are particularly intense when im anxious or hungry. 
    I have pernicious anemia too so I have always thought my “foggy head” was due to this. 
    Been on anti depressants for 9 years (150mg Sertraline) and the neurologist has advised me not to come off them yet as he thinks it’ll make my symptoms worse.
    Just looking for any tips or advice? Feel like my body is double my age and worried I’m going to just get worse and worse 
  • Tori_ScopeTori_Scope Posts: 5,039

    Scope community team

    Thanks for joining and sharing your experience @nix91 :) Perhaps you and @diane01 could connect? 
    Online Community Coordinator, she/her

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